Learning independence: Lily-Grace's #canediaries

Post date:

Monday, 20 March 2017

Our little Princess Lily-Grace was born in August 2008. She was our third child and much wanted little girl. It had been a difficult pregnancy. I was diagnosed with Preeclampsia and induced the next day. She was born weighing just 4lbs 10oz.

In the first few days of her life she struggled to maintain her blood sugars and body temperature. On day four she had a hypoglycaemic episode. She was rushed to NICU and we were told she was unlikely to make it through the night.

That night she showed us she was a fighter and to never underestimate her and she hasn't stopped since.

An MRI at 10 months revealed she had suffered a significant brain bleed wiping out her parietal and occipital lobes. Her optic nerves were also damaged. Nystagmus and squints were also diagnosed.

It was the beginning of the sharpest learning curve of our lives.

Lily-Grace growing up

LG was always a happy baby. She hit milestones and we began to relax. Every morning she greeted us with a huge beaming smile. She loved to crawl and was really fast. She was nearly two before she was confident enough to take steps without her hand being held. (Hindsight now tells us a pre cane would have helped her).

Three Christmas' ago whilst playing she picked up a wrapping paper roll and used it in a sweeping fashion telling us it was helping her 'see' where she was going. Shocked, yet inspired by this, I researched cane training. Posted a video to my Facebook wall enquiring and received several comments asking why she hadn't received any cane training?

The simple and short answer being no one had mentioned or offered her any. I took it upon myself to request that she start training and managed to locate a couple of canes from a friend who's daughter had outgrown them.

Learning to use "caney" and the #canediaries

As soon as they arrived I filmed her using a cane for the first time. She walked independently up our short road. I was amazed. She would never have done this previously without holding one of our hands. I posted another video and many commented on her natural ability.

"The cane has changed her life and opened up a world of opportunities"

Since that day she has received training every week. In the last year she had small bursts of training every day. She never leaves the house without her cane and enjoys the independence it gives her. She has three canes that sit in an umbrella stand by our front door. She chooses which cane to use depending on which tip is most suitable to the environment we are visiting.

Out and about we receive quite a bit of attention. All of which are very positive. She is proud to talk about her Caney (her pet name) and why she likes using it. She takes a bus to school and leaves the house at 7:50am with her Personal Assistant. She boards the bus independently using her cane to gage the steps.

She has danced at Downing St and we travelled to New York where she and her friends delivered a speech at the United Nations. They received a standing ovation. She attends Brownies and enjoys a after school dance club.She is a keen ballet dancer with the all inclusive group Flamingo Chicks. Last year she was voted by her classmates to be an Agent of Change.

Her Mobility Officer tells me she is a joy to work with. She is competent, hungry and determined. She is smashing her targets set and recently has nailed stairs.

It has changed her life and opened up a world of opportunities.

By Kristy Hooper

Discover more about Lily-Grace and Kristy at projectbrailler.co.uk, which Kristy set up to raise money to purchase Smart Brailing machines for blind children. Or watch Lily-Grace in action on Kristy's Youtube channel in the video below.

"Lily-Grace may be blind but she has a no-limits attitude to mobility. She wants independence and we as her parents do everything we can to support and encourage her. No parent gets excited at the prospect of their child needing a cane. But every parent gets excited at the prospect of their child reaching their full potential."

- Kristy Hooper

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